browneyesmom

Yes, they can get strep (or fail to eradicate it) while on antibiotics. Strep does not always come with a fever. Some kids do not have fever at all with strep throat infection. My DD11 happens to be one of those (high fevers with ear infections though) but there are lots of kids that present this way, given what I've read and the kids I've sent home to the doc from the school clinic who turned out to be positive for strep, with no fever. I too, would take her in for peace of mind, given her history - just explain her condition as in the case of our children with this, history has taught us it is better to be proactive. Trust your instincts. I hope she's feeling better soon and you both rest well tonight.

Hi Kara... I had some research articles from when I first spoke with her elementary school nearly 2 years ago, but I can't locate that binder. Yes, I'd be delighted to have any information you can provide as to what you put together. I'll PM you my email address... Thanks very much! Denise

... and I know we have all seen some really tough stuff... please do not feel badly about sharing your experiences. They need to know the truth about this condition so they can start to be in a position to help. Thanks again!!

Thank you both for responding and in answer to your question, Nancy, I'm after whatever we can do as school nurses to help support the needs of children with PANDAS and their parents in working with them... and this goes beyond the nurse's clinic to the entire school, in my opinion. First and foremost, their focus will be on what they can do as clinicians (I work as a sub RN in our school system); however, they are also in a position to be able to educate those around them (admin, teachers, etc.) and start helping to turn the tide for our children in many areas at school... by advocating for what they need. So... whatever experiences you folks have had (and I realize they are varied - that's the great thing about gathering the info here - a large collection of PANDAS parents), I want whatever you have experienced that went wrong and could be improved, that went well and was helpful, etc... all of it. I want to be well prepared for this opportunity to help other children. Thanks again for any input... I know you are all busy caring for your children and have other demands... I really appreciate your input here and want to do what I can to raise awareness, educate and advocate for our children.

I may have an opportunity soon to attend a meeting of school nurses (hopefully, this is only the beginning and there will be more) in which I will speak about PANDAS. School nurses are in a prime position to help recognize a child who may have this condition, advocate for them & educate parents as well as administration & faculty. It is my hope (and will be my suggestion) that they will take my information back to their respective schools and and raise awareness & advocacy there. I'd like your input as to what you believe your children really need in the school settings. How could they better support our children... both in a practical sense and any other suggestions you may have. While I assume my time will be limited and I may not be able to address all issues, this one is near to my heart and I hope to have handouts prepared... hopefully in PowerPoint format that they can follow during my discussion, ask questions, then bring back to their schools. Please share... thank you so much!!! :~))

http://pandasnetwork.org/2011/01/events-swedo-maloney-on-blogtalkradio/ January 12th, 2011 Two BlogTalkRadio events are coming up that discuss P.A.N.D.A.S. Mark your calendars and join the community for Q&A, the latest news and more. Wednesday, January 12, 2011. 9 PM ET features Beth Maloney, mother of a PANDAS child and author of Saving Sammy. - – - – - – - Wednesday, February 9. 2011. 9 PM ET features Dr. Susan Swedo, a leading researcher in PANDAS. Dr Susan Swedo, Senior Investigator Behavioral Pediatrics and Developmental Neuropsychiatry. Her laboratory studies childhood-onset obsessive compulsive disorder and related disorders, including Tourette syndrome and Sydenham chorea. Dr Swedo is the leading researcher in PANDAS and related disorders. Dr Swedo joins us to discuss the latest in research and the new clinical trials being conducted to find treatments for these disorders. From: http://pandasnetwork.org/2011/01/events-swedo-maloney-on-blogtalkradio/

Hi Linda... just got home from a 2 day break at the beach. I do not see an email from her - going to check YouTube as well - I've never emailed on there before, but it did send... not sure if it will notify her via email or not. I too, am concerned for her and others struggling with this condition. I want to help any children/parents we can as it is not so well known... hopefully, she will either receive the message soon or a doctor will help guide them.

Interesting thread as this has been one of the things on my plate more and more recently... my DD11 has aphasia during episodes sometimes, yet she is able to write what she wants to communicate - just not speak. Then, it starts to return, but her words are garbled for another phase, then it returns to normal. During severe episodes of aggression, she sometimes has a guttural, very controlled voice when she threatens. Do others see this too?

Oh wait... EAMom & Buster are spouses? lol... Totally have missed that one! ;p

While lacking a formal diagnosis for SC as I think her docs have focused more on the severe PANDAS, my DD11 also has uncontrollable movement issues & all the s/s of SC. I'm interested in reading that research as well.

Thanks, but our children are the awesome ones!

While I follow the subset hypothesis trying to be conveyed here, I'm a little confused about the diagram in that: if about 50% of people with ARF have carditis, the diagram would lead me to believe it is more like 80% if about 30% of people with ARF have Sydenham Chorea, the diagram would lead me to believe that figure is closer to about 98% Additionally, my understanding has been the same as Vickie's, that the dramatic onset of OCD is greater than the tics... but I don't have research at my fingertips at the moment to support that. I like that you have the tics & sudden onset OCD overlapping as many of our children have both.

I found her; I have an account on YouTube and I am emailing her now and linking her to this forum. Bless you, Linda... for reaching out to her. ♥

You know, my DD does not want to say or hear "Grandma" (she passed almost 2 years ago), "incontinence" (this is horrifying for her when it happens) & sometimes the word, "PANDAS"... not a huge surprise there, bless their hearts. I suspect the last real rage episode she had in a store last week may have been prompted by her seeing pajamas that had Panda bears on them. As I went around one side of a rack, she went the other way & saw them - she started punching the pj's with a vengeance and only stopped when I covered them with others.

Thank you both for your responses. Yes, Norcalmom... this is what happens with her. Somehow she keeps it either under control or ... also, she told me this recently... that with the movement part of it, she is able to direct the movements to some extent, although not stop them. The rages remain more of a mystery as to how she manages to keep them down when not at home and I wonder what toll this may be taking on her and how I might be able to help her better. I'm glad you posted Emerson & it's nice to see you back; I hope you are doing well. I suspected you might have some insight for me into the aphasia & memory lapses. If I recall correctly, you told me once that you also had a "limp" phase post-rage episode. I have asked her about the speech and what she tells me is that she knows what she wants to say, but can't get the words out of her mouth. She is sometimes able to write it though... other times, her handwriting is also illegible. Can you tell me more about the episodes, Emerson? Are/were you able to keep them down when not at home? Is this familiar to you and if so... what is it like for you? I so want to better understand and support her, but she struggles to tell me what is happening and only seems to manage to ask "Help me!!" sometimes. Do you have anything you experience that tells you when one is starting... esp the rages? Is there anything that might help deter one or help you feel calmer/more at peace? I realize this is probably less of an issue for you at this point, but any insight is so appreciated!

Kathy... you and Liam have had influenza and today was his first day back at school? Poor fella & mommy... I remember when my DD11 had influenza... first few days back, she could not even make it a full day. I hope you both feel better soon! Denise

I probably should have asked about the aphasia as well.... times where she is unable to say what she is thinking because her mouth will not cooperate other than grunts, then she usually goes through another phase where she has garbled speech, then it gradually resolves (over up to an hour or so) and her speech returns to normal. Realizing that the basal ganglia is not so far from speech areas in the brain, this one makes sense, but what I often struggle to understand (even though I see many of you posting similar issues) is the episodic nature of this condition and it's episodes. ???

YVW... I just emailed her some links and information about PANDAS, so hopefully, it will be posted there soon.

My daughter is not fully recovered yet, but had first IVIg around Christmas and we definitely are seeing plenty of wax/wane, sawtooth recovery. It is the reason I made the PANDAS Awareness Ribbon with sawtooth edges... because this condition is so episodic... and for the effect on our children and families. Hugs Kathy... they will get there as we continue advocacy for them. ♥

Thanks Shadowtails & Kim... on my way now!

I'm so glad he is feeling better today & hope he continues improving!

A friend emailed me this link today and I thought some here might find this helpful: http://chosenfamilies.org/ As some of you may have experienced, it can sometimes be difficult for people of faith to know HOW to reach out to and support families with a member suffering with such conditions. Often, there is avoidance & sometimes, people can even say things that come across as hurtful. My understanding is that it is a Christian site, seeking to support families with neuro-biological conditions & help people of faith to minister to those families in need. I think there are also some practical links posted there too. I plan to contact them to find out how to add PANDAS to their info.

My DD11 is unable to articulate to me that she has an awareness that an episode is starting. Living with this the last couple of years, I have learned the early signs, but not how she feels before it starts... when it is on the way, as I have read others describe. In the beginning, a couple of years ago, she said she had the 'feelings' all the time, but tried to hold them inside and sometimes, it got to be too much for her. Additionally, my ex-husband seems convinced that there is some "trigger" in my home because he says, "She never has the episodes when she is with me" for visitation. I asked our psychologist if this situation meant that there is something about my home or me that could be setting her off. He said that it's actually typical for kids to suppress it, but run out of resources and let it go where they feel most safe & comfortable. Not wanting to leave any stone unturned to help her, I do wonder about that sometimes and if there is anything I could be doing differently to help her. Finally, she often does not remember these episodes... does anyone know why this happens for PANDAS children? Thanks!

I believe our Immunologist got our DD11's Ig infusions covered by listing it at PIDD (Primary Immune Deficiency Disease/Disorder), after her labs showed her to be deficient in IgA & IgG.

To get our Ig infusions approved, our Immunologist listed DD11's as Primary Immune Deficiency Disorder... based on labs he did that indicated she was low on IgA & IgG.